Response to neoadjuvant chemo?
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Thanks, guys! LOL
Meg, did you get genetic testing and if so what were your results (sorry if you already posted this)? I've been told the main reason they would suggest oophorectomy versus suppression is being BRCA+. I have a variant (favor polymorphism)on BRCA1; although currently considered benign, it still makes me nervous. But I agree--I'm relatively young (44), and will potentially be on an AI for up to 10 years. A shot every month will be difficult. I will probably try again with the surgery at some point, but I suppose it's no rush for now.
How's everyone else?
Also bumping in hopes to hear from others!!
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Hey mom of twins, what sbelizabeth said!
I have a 2nd opinion MO and she did tell me odds when I asked and I wish I hadn't. And I'm not sure what exactly the odds were about--recurrence? 5 year survival? I'm going to stick with my local MO who tells me her goal is to get me back into my life. She had the onc social worker call (she knew I probably wouldn't call myself) and that was actually helpful. She knows the BC drill and doesn't diminish any of it, but seems to focus on problem solving. I've started anastrozole and that is meant to be the "big guns" in my ER+ case. I start rads soon. Did the chemo, did the surgery. Now to start exercising and lose weight and get back into life.
My daughter is 15. She doesn't talk much about my cancer at all. Last week, a classmate's dad died of lung cancer (another nonsmoker with lung cancer). It was discussed at the beginning of the day and she broke down and called to come home. Crap right? She has started seeing a counselor and that is good I think. She has extra stress as she's started at a new school. She told her godmother she'll have both breasts removed if any sign of cancer
.Well. Back to life.
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Hey reflect--thanks for sharing!! The light is at the end of the tunnel--you're almost done. Hang in there! The Mayo oncologist did go over the "odds" with me, and she meant my percentage risk of distant recurrence over my lifetime. I am happy to share those numbers if you'd like to hear them, but I don't want to discuss it if it makes anyone nervous or uncomfortable.
Reflect, I'm sorry about your daughter. Tough age, and it's so hard for anyone close to cancer to hear those stories. Hang in there and I hope she's okay. But she will watch you get through this with all your strength and courage!!
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Thanks mom
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Mom of Twins, being that we have similar stage/diagnosis, I certainly wouldn't mind hearing the risk percentage you were given.
I just got good/bad news today. I was randomized on the PALLAS trial to the B group so i'll get nothing but Aromasin.
Its good news because I'm tolerating Aromasin well but bad news cause I was hoping to get the xtra protection that Pablociclibmay offer.
My MO never talked risk percentages so now I'm curious.
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Opt4Life,
So, I was told that with my size tumor (estimated at 2.2 cm by imaging) with 2 positive nodes and with my bio markers, etc., my estimated distant recurrence risk of doing surgery alone was 40-45%. They said chemo reduces that risk by approximately 30%, and hormonal therapy reduces it by 50%. So doing the math, the treatment brings me to about 15%. Ballpark risk they said was 10-15%. Anything is too high in my eyes, but I still worry that they are being optimistic considering my subpar response to chemo and positive nodes!
I'm sorry you're not getting the Palbo. I'm sure that's very disappointing, and I'm trying to prepare myself for that disappointment, as I realize it's a good possibility. Rest assured, though, that Aromosin on its own is very powerful.
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Mom_of_twins My oncologist believes due to my higher recurrence risk and number of positive nodes and very high estrogen positive status that my best risk reduction comes from ovarian suppression plus an aromatase inhibitor. This is supported by recent studies we discussed, so I am in agreement for now. I am going to try to ovarian suppression drug with the AI for awhile. If it seems like I am tolerating the side effects, it might be easier to go ahead and do the oopherectomy than to continue to get a monthly shot for 5-10 years. My oncologist did say sometimes insurance doesn't want to pay for surgery unless you have genetic tests to indicate ovarian cancer risk (and I don't.) But she believes this is why it isn't more common among the non-BRCA but high-risk population. It seems crazy to me that insurance companies are willing to pay for a monthly shot which is given at a clinic for years, and not a one-time outpatient surgery. But she also said they are having some success with the making the case that if women choose oopherectomy it is a valid alternative and convincing insurers to cover it.
reflect I have a 12-year old daughter, so not quite to that age yet, but she also doesn't talk about it much. Its hard to know how they are processing, if they are talking to anyone, etc. Glad you have a counselor, hopefully that will help. I just keep hoping the fact that at this age they are mostly self-absorbed will keep her mind off of worrying about me.
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Meg, yes I'm with you. I'm convinced as well that ovarian suppression + AI is the way to go. As I said, my insurance would cover the surgery, and I know that many others without genetic mutations that had an oophorectomy were covered, as well. Agree that's probably the less expensive option versus monthly injections for 5-10 years.
I'm only a week into Arimidex and feel okay. Just kind of waiting for the side effects to hit me...
Getting a DEXA scan in the morning. Depending on results, we will discuss if I will get Prolia injections.
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meg and reflect - I go to Dana Farber too. I do commute two hours from Maine, but I grew up right outside of Boston, went to school down the street and my family is still there, so I don't mind at all. I love my care there. Sadly just learned my MO who I am very fond of is leaving, I'm sure I'll like the new MO assigned to me. Still on herceptin and lupron shots so I go down twice a month. Meg and Mom - I'm also on the OS + AI combo. Letrozole has been tough on the joints but trying to push through. As long as I keep moving it's manageable, it's when I'm sitting around the aches creep in. Definitely considering an ooph, I just feel like I need a bit of a break first - I just finished rads at the end of August ( had rads locally, not in Boston
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Fightergirl and Meg, I'm going in to DF Friday for a 10AM follow up with BS and a 4PM mtg with MO to discuss and --I hope-- enroll in PALLAS. Why do I get these bookend appts? At least it's better than the 7:30AM appts I've had. The care is excellent. I can't believe they did a lx instead of mx for me--3 cancer sites and 2 ADH, 2 quadrants. (The one time it's good to have big mama breasts, plenty of margin available lol) I'll spend some time in the garden there--haven't checked that out yet.
Re: PALLAS, I was wondering whether it might be better to "save" palbo for the future when I might need it but MO said let's do it. Hope I get it, but if not, so far OK with anastrozole. Although I have these weird, zingy like chills that go up and down my body from time to time. Very strange...anyone heard of this?
Opt4Life, I'm sorry too that you are in control arm. I agree with Mom of twins that AIs are the big guns--so I've been told all along. My MO told me I should stay on them for life so here's hoping they work.
Meg, it is really hard having a daughter while going through this. I worry about her so much (now and in the future). But my mom had BC twice--27 years apart--and she is with us now at 84. That made an impression on me, and I can remind my daughter of that. ( I had gene testing done--all negative.)
Fightergirl! I remember you! You encouraged me to go to Dana Farber--thank you!
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reflect- Oh, we would be very close to meeting in real life! I also travel to get to Dana Farber and I am in Boston on Friday as well, but I will be over at the Brigham and Womens campus seeing my plastic surgeon and doing PT- so I won't be at Dana. Otherwise we would have been in the waiting room together.
After radiation I will continue on both the herceptin and the Lupron, but I think I will probably switch to doing those locally at some point (although between follow-up scans and surgeon and MO appts, I am going to be up there a lot so may just continue for awhile doing it there.) I am doing radiation there, so I will be staying nearby and traveling home on the weekends soon (my job allows me to work from anywhere.) fightergirl711- Not sure who your new oncologist will be, but just wanted to note that I have Dr. Herold, love her. It has to be hard to switch, though, feels like a marriage at this point!
reflect- My mom is also a breast cancer survivor. I agree- I remember how strong she was and how courageous she seemed to me (and still does.) Here's hoping thats the takeaway!
I'm curious why some of us are on Arimidex and I am on Aromasin. It seems like studies have shown them to be equally effective, its just interesting that even going to the same clinic there would be variance. I just started the Aromasin, so not noticing side effects... yet.
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Meg. too bad we won't get to meet, that would be fun. Chemo was local and rads will be too. What follow up scans do you mean? "Routine" mammos/MRIs? I think I will do those at DF also, as long as local MO is good with that. Re: AI choice, my doc said she picked anastrozole b/c it started with "A". There may be diffs in SEs that make one better than another for some women.
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Mom 2 Twins, thanks for the recurrence risk info. I honestly never thought to ask about risks-needing all my focus just getting through treatment. Now the hard part is trying not to let 'worry' be my new best friend.
Was hoping to get some further treatment from the PALLAS Trial but like you and reflect mentioned the AIs are definitely the next line of defense for us ER+ gals.
Meg, I was given the choice of Tamoxifen, Arimidex, Aromasin, and something else I can't recall. My MO said her patients so far have had less complaints on Aromasin. But she said I could switch at anytime too. That was enough for me at least to give it a try. I take my pill religiously same time every night. I recently got down to my last 10 or so pills and I was hounding my MO's office as if I needed my next hit. Thankfully, they understood and were happy to send in another scrip to my pharmacy.
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reflect - I am going to have to have another echo done in 2017 Jan/Feb sometime and then a follow-up CT sometime about 3 months from now as well, just had one a couple weeks ago. ( CT for little lung nodules that have been there since the beginning and have not changed at all through this entire process, but now that they have seen them they like to track them.) So I figure between those, MO visits and PS visits, I will be at DF at least once a month through March, in which case might be easier to do all my shots and the Herceptin there. I finish Herceptin end of March, so I might just wrap it up there. At least no more mammograms for me, double mastectomy! I have not yet really seen much of my local MO- one appointment and then told him I would be back when I finished up treatment. I traveled for chemo as well.
Opt4Life I heard that taking it the same time each day was important, so I chose lunch just in case I decide I want to fall asleep early during radiation.
I also noticed when I filled it, the pharmacy had to order it... so I need to make sure I call in those refills early I guess!0 -
I'm on letrozole (Femara) and I get mine through Express Scripts, a mail-order pharmacy. They send me a 3-month supply through the mail, and arrange for refills with my doctor when needed. All I have to do is remember to take my pill, and like opt4life, I'm religious about it. I don't want to miss an opportunity to keep the beast shackled and locked down.
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Hi Meg, I hope your Friday visit to BWH went well. I saw BS and she started me on antibiotic as she was a bit concerned about axilla incision, scheduled a mammogram for August 2017. Saw MO and signed contract for the PALLAS trial. I go back in 2 weeks for blood work prior to starting.
Elizabeth, that's a great idea to get 3 months AI at a time. (I have anastrozole TEVA brand from CVS.) I'm going to do that. I take it at night and so far the only SE is this very weird crawling tingling feeling that rolls up my body. MO says rare SE and not worrisome.
So, leaving Boston, in the parking lot at Alewife, I fail entirely to see the curb and go flying. I fail to stick the landing. Twisted L foot and landed on R knee. So now I'm hobbling around trying to accomodate both plus continuing axilla pain. lol. Wondering if I should have foot xrayed but not inclined to visit any hospital if I don't have to!
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reflect Oh my gosh, so sorry about your fall! I hope nothing is broken!! My visit was easy, an expander fill (a huge one... last one before radiation so they overdid it, not fun over the weekend but I just keep telling myself at least its done) and a Physical Therapy visit, which I love, because she is doing lymphatic massage and myofascial massage, so I actually feel much better when I leave. I am going to keep going all through radiation as well, my surgeon insists it will help and while I hate having two appointments on a lot of days, it really has been helping. I go back in this week to get my radiation setup, tattoos, etc. Is your tingling feeling in your whole body? I have something that I would describe kind of like that, but that goes just up my back.But yours started after the AI? Mine started when I was doing AC chemo, but still persists.
I don't see my MO for a few more weeks, but will follow-up with her about the PALLAS trial at that visit because the timing would be good to start process. I also have my DEXA scan coming up. Can anyone tell me if they use contrast for that?
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You know, I'm really happy to see so many people here pushing to go outside the SOC and go for a trial/extra treatment. Even though I still ended up with crap in my head, I'm so happy I did the Kadcyla trial...
1) I don't second-guess myself on whether I did aggressive enough treatment.
2) All scans have shown me to be NED below the head so there's a possibility Kadcyla helped keep my body clear.
3) I helped research.
4) I sent a clear message to the medical community that I will not settle a shrug and a "guess that's all we can do" when we knew I was high risk
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reflect, I'm so sorry about your fall, too!! I hope you feel better soon, too.
Meg, I just did my DEXA and they did not use contrast. However, you can't do the DEXA if you've had any scans that used contrast within the previous two weeks because it can affect results.
I haven't gotten my results yet, but I imagine I will get them sometime this week.
I hope everyone is enjoying the weekend!
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Bad_At_Usernames I originally traveled to Dana Farber for the Kadcyla trial. Turns out, my tumors were HER2 multi-expressive, which I would not have discovered if I hadn't gone through the additional testing required for the trial. So even though I ended up taking a different route, I am so glad I pursued the trial as it changed my course of treatment. I have learned that even just asking the questions about trials can make a difference in your treatment, totally agree on sending the message to you Dr's. Just had this experience last week when I met with my radiation oncologist, I asked him about trials of Photon therapy for breast cancer, he said they will only do it for patients who have it on the left side to avoid the heart. I told him about a trial (in the same city) that told me they were admitting patients for either side. He wasn't aware of it. So I am always going to just ask!
Mom_of_twins Thanks! Since I always have multiple appointments in a day when I go to DF often starting with infusion, I end up leaving in my IV for the whole day when I have scans (I don't have a port.) The last two times at my very last appointment of the day they said "you don't need contrast, so we can take this out." So much better to take it out earlier in the day if that's the case!
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You're welcome, Meg! When is your DEXA scan? And are you going to do the proton radiation?
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I don't think I am going to do the proton radiation trial. It appears right now the timing to get started is going to be longer than I can wait after surgery, its proving to be a slow process. Research coordinator was out for a week, then the RO was out, etc. I am still scheduled for my conventional radiation setup later this week and I don't want to push this much further out from surgery. After all of the work on the trial, I could still end up in the conventional treatment arm anyway of course. I will talk to them again later in the week just to see where we are, but I am not optimistic.
My DEXA is the Oct 25th.
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Meg,
Makes sense. I almost did proton radiation because mine was left-sided and I was concerned about cardiac issues. They have advanced so much in radiation treatment though; I did the breath hold technique and they showed me on their 3D CT mapping how holding my breath completely pulled my heart out of the radiation field. They have definitely made vast improvements in radiation therapy.
I was told that proton therapy can be a little harder on the skin and reconstruction. I did direct implants and although the cosmetic piece wasn't even close to my top priority, the IMRT/RapidArc technique did a good job of targeting the intended tissue and sparing the peripheral areas. I did direct implants and my reconstruction endured it pretty well.
Good luck with everything!
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Mom_of_twins- oh yes, I talked to my Plastic Surgeon about it on Friday and she was NOT excited about the prospect of proton, I need to have my skin in good shape for implant exchange she is pushing my expander as far as she can before radiation, but no question my skin is thin at this point. She said proton is harder on the skin and she didn't think from a cosmetic perspective I would be as happy with the result. So that definitely is something to consider as well. Like you said, not at the top of the list, but definitely makes me feel better if I end up doing conventional. And my mom had conventional radiation 20 years ago before the breath holding and I'm sure less precision and on the right side, and she hasn't had heart effects, she is in her mid 70's now. Mine is left side, so I am really only worried about lungs, and even then I am not super worried. What is interesting to me with this trial is straightaway they make sure your insurance will pay for Proton. So they are going to bill you for it either way. Lots of people apparently are kicked out at that point from even participating. So its a chicken and egg problem- they can't prove its effective to then get insurance to pay for it because insurance won't pay for it to prove its effective. Ugh.
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Hi, can anyone tells me how can you tell if you need genetic testing? I'm the first woman in my family has BC, all my maternal sides mom , and several aunts in their 90 and no one has cancer. Only my father has prostate cancer dx early and he is fine in his 80; my mom is 80. I blamed in my estrogen, the food, makeup, environment. I also worry if my two daughters will be affected. They're 18 and 21 yet they understand but numbed to the issue of BC. I just want them to focus on school than BC. Any suggestions?
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Houston, may I ask how old you are? If someone is young relative to breast cancer (in their 20s, 30s and 40s), usually genetic testing is recommended because the younger you are, the more suspicious it is that there's a genetic link. And then of course, family history weighs into it, which it sounds like you don't have.
With that being said, it's usually a personal choice and obviously has social implications (like stress for yourself and your daughter, etc.). I had it done because my sister was diagnosed six years ago at her baseline mammogram at 40; however, we both tested negative (except I have a VUS on BRCA1 and she has one on ATM).
I have met many woman who have a crazy strong family history of BC and tested negative, and others who have none and tested positive. Sometimes it seems like there's no rhyme or reason. I suspect there's a lot of mutations that cause BC that they just don't know about yet.
I believe mine and my sister's is genetic, and whatever mutation that is responsible for it is yet to be discovered.
She and I both plan to continue to follow up and be monitored with genetic counselors/blood tests. I have 4 little daughters and she has two teenage daughters.
Not sure if any of this helps, but just my thoughts!!
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I did have genetic testing, but my mother and my maternal grandmother both had breast cancer. My mom had already been tested, so I already knew that I was unlikely to have the gene but was tested anyway and it was negative. Similar to Mom_of_twins I believe mine also has an inherited component, but perhaps it isn't a specific gene, maybe we are high hormone producers or something of that nature. But if I could have done something to prevent this, like perhaps going on Tamoxofin after I was done having kids, it would have been worth it. And in cases like mine with a strong family history, some prevention is being offered and I hope one day there will more available for my kids.
Genetic testing is a very personal choice- if you are considering it you might want to talk to a genetic counselor, they can help you understand the possible results and what they may mean for you and your daughters. I was also in school when my mother was diagnosed and at the time (I was 19) I didn't understand the possible implications for me, I was just worried about my mom's health. She didn't have genetic testing done when she was originally diagnosed and I didn't even think about it. After I had daughters then I wanted to know and asked her to see if she could get genetic testing done, which she did some years ago. And despite my mom and my negative genetic test, my daughters will still be high risk and due to my younger diagnosis will probably start screenings in their 20's. So I do think regardless of the testing results, its important to think about what risk may be for your daughters and let them know so they can plan. Also, I encourage you to just keep really good records. It was actually quite helpful for me to have my mom's medical records to be able to see whether I had the same type as hers, have her genetic test results, etc. A lot has changed since she had it, but a lot hasn't. This also helped with the genetic counseling discussion.
Sorry I don't have a specific recommendation because I think its such an individual decision. Me personally, I like ALL the information, so I wanted to know. I know everyone is different though with how much information they want, and whether they want it all at once. BC brings with it such information overload. Genetic testing is an easy blood test and can be done any time. So if you decide you don't want to do it now but do it down the road, thats also an option. There were a lot of changes between when my mom did it several years ago and when I did in the number of things they could detect, so its constantly evolving.
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Hi, thank you for all your helpful information. I was diagnosed at age 52 (04/16) but it actually began earlier in (11/15). It's scary when you don't know the cause of reasons and I was in denial at first with the tiny lump. I also have a PCP that told me I don't need to do a mammogram every year. So when I did mammo in 12/14 it was fine, I didn't see the risks for BC. I wish she would be more informative about risks such as late menopause, and refer me to see the OB/Gyn for further testing. I'm probably not high candidate for BRCA but it's just for peace of mind. Does that mean both me and my daughters have to be genetic testing together?
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May I ask how does proton therapy works or different from traditional radiation? I too have fear that radiation to the left breast may affect the heart, so if this is an alternative, I'll go for that. I recently did a UMX still recovering and waiting to talk to a radiation oncologist. Any inputs are appreciated.
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Hi Houston,
So much of this is frustrating. I had both a clear ultrasound and mammo just 7 months before diagnosis, and had been screened every six months since my sister's diagnosis in 2010. It's infuriating that despite being diligent, I still had relatively advanced BC.
It literally popped up out of nowhere; but clearly it had been there for years. I wish one of my doctors had educated me more on dense breasts and how imaging can miss it. I wish so much it was caught earlier, but also grateful we caught it when we did. But imaging seriously failed me.
No, my opinion is that you can get genetic testing first and see what the results are. Might be easier to decide about your daughters once you know your own results. But, of course, whatever brings you peace of mind.
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